It sounds like celiac

[Debstaats]

I lost 30% of my weight in a year with out trying. After a ton of tests were done, all negative, it occurred to me, that I was diagnosed with celiac as a child, but a doctor a few years ago told me I did not have it. Before that, in my adult life, I have eaten very little gluten. But, when I continued to lose weight I started eating pastas, pastries and other things full of gluten trying to gain. The more I ate, the more I lost. Then one day it dawned on me, what if that doctor was wrong? I told my endocrinologist and she ordered a tt IgA. It came back 39.0. I am seeing a different GI dr. I also have the celiac genes. I was so physically ill when I saw her, I elected to just go on a strict gluten free diet. That was 4 months ago. I have gained back 15% of my weight and feel great. My tt IgA this time was <1 !  They can not say I have celiac, because I did not have an endoscopy. I am 73 yrs old. Should I chance gluten again and get the endoscopy? My PCP doesn’t believe I have celiac and rolls her eyes. She said the tt IgA  is not reliable. What do you think? Should I have the endoscopy to clarify?

[trents]

Your PCP is not well informed. The tTG-IGA is a very reliable celiac blood antibody test. There are some other foods, medications and diseases that can cause elevated tTG-IGA but the chances of the elevated tTG-IGA count being due to some other cause than celiac disease is not very great. This is especially true given your symptoms, your genetic profile and the fact that you have improved on a gluten free diet.

Is there any particular reason you need an official diagnosis?

I am attaching an article which outlines the various antibody tests for celiac disease and their reliability: 

 

 

 

[Debstaats]

Thank you. I just get tired of my PCP acting like I’m an idiot. My GI feels I have it, but cannot officially give me the diagnosis without an endoscopy. So, I’m officially gluten sensitive, without the endoscopy.

[trents]

Well, you have some decisions to make. If you want an endoscopy, you must start the "gluten challenge" and daily eat the gluten equivalent of 4-6 slices of bread for several weeks.

[Scott Adams]

If you are doing great on a gluten-free diet and see no reason to get a formal diagnosis of celiac disease, then it's perfectly fine for you to just stay gluten-free. 

In the Europe the current protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!